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Tuesday, 31 July 2012

Just in case you missed last night's Dispatches and Panorama - both investigating the real stories behind the government's Work Capability Assessments, used to determine if a sick or disabled person is capable of working or not - here are the links to the shows :

Monday, 30 July 2012

As most of you will probably know by now, the two main BBC investigative journalism programmes - Dispatches AND Panorama - are showing programmes on ESA and the Work Capability Assessments used to determine whether sick and disabled people can work or not.

At last, we have some investigative journalism, at last, we're being heard. At last, the media are starting to listen to us and respond, at last they are starting to question the DWP corporate line....

at last, at last at last....

**Please tweet this or link it to your Facebook page, maybe put it up on a blog if you have one. We need to let people know to watch, to drag their eyes from the Olympics for just an hour and see the programmes we've been desperately hoping would get made. So, calling all Spartacii! All hands on deck to make sure everyone watches these programmes.

Friday, 27 July 2012

Yesterday, I wrote a post saying that this Government were incompetent and incapable and that we must have a vote of no confidence immediately.

Lots of commenters agreed entirely, but asked how we, the public, can force this to happen.

When the coalition formed in May 2010, during the five days that it took to form the government, something convinced the Liberal Democrats that we were in a desperate financial situation way beyond anything us mere mortals were being told. They performed a 180 degree u-turn on their economic policy and made the extraordinary decision to go for a full coalition, not a supply and demand arrangement.

Even more extraordinarily, they handed economic policy entirely to the Conservatives and agreed to support their austerity programme totally and without question.

What does this mean? Well, all around the world, coalitions tend to work on what is called "Supply and Demand" Certain policies are agreed in advance where possible, but all other decisions are dependent on free votes in parliament. This protects the integrity of each party and allows a degree of independence to be maintained throughout the coalition.

These shadowy men who frightened the very life out of the Liberal Democrats, inexperienced at holding power, convinced them that this kind of arrangement wouldn't work. They argued that our economic situation was so precarious, so dangerously unstable that any hint that the new coalition could not provide "strong and stable government" (Remember how often they used the phrase?) would lead to the bond markets taking fright and our whole financial house of cards would collapse.

Who were these shadowy men? I cannot know, but I feel very strongly that Mervyn King from the Bank of England, the IMF and possibly Gus O'Donnell, the then Chief Civil Servant, supposed to be entirely neutral, played strong hands to ensure that there would be a Conservative led coalition supported by the Lib Dems. Without the Conservative austerity programme, they all believed we would face financial Armageddon.

And so, we ended up with a Liberal Democrat party, desperate to prove that coalition can work, tied into a full coalition in which financial decisions would be taken by the senior Conservative partner.

Now, fast forward two years and we are faced with an entirely discredited economic agenda. Austerity has failed spectacularly, just as most knew it would and the Lib Dems have been decimated by the policies that followed from that fateful decision. The treasury controlled student fees, the treasury controlled welfare reform, the treasury controlled police budgets and NHS reform and public sector pay. The treasury went on to control everything. George Osborne tied ministerial hands across every department and there was absolutely nothing anyone could do about it.

Now, in 2012, those same shadowy men are calling for a change of direction. They are calling for large economic and fiscal stimulus. They are calling for infrastructure spending and tax cuts. They are, effectively calling for a "Plan B" or to put it bluntly, they are now calling for exactly the kind of economic policies that both the Liberal Democrats and the Labour Party called for before the election. They are urging Osborne to slow down, urging him to ease back on austerity, urging for him to stimulate the economy.

Yet Liberal Democrats, destroyed in the public mind, discredited as politicians and decimated in the opinion polls cling to this failing coalition like drowning men cling to a lifeboat.

There is a clumsy, one line explanation that we hear time and time again for this : Lib Dems, seduced by ministerial limos and a whiff of power are so selfish they will not put the public good ahead of their own ambition.

I believe this is utter nonsense.

It is simply not credible that every Lib Dem MP would accept this argument. Whatever we think of politicians, on the whole, they believe that they act in the public interest. It would be impossible to hold together a coalition failing so spectacularly, based solely on selfish self interest. Sure, a few would be perfectly happy, but many would not.

So there is something else. And that "something else" can only be a belief that if they flee the sinking ship, the outcome would be more serious than their own precarious situation. They must still believe that financial Armageddon would follow.

Think for a moment : The Lib Dems announce today that they gave it 110% but that their coalition partners, the Conservatives, were simply too intransigent, too arrogant and too incompetent to govern. They can no longer stand by and watch the wholesale sell-off of our NHS, the futures of young people, destroyed by failed austerity or sick and disabled people crying out for help. Despite putting the prospects of their own party to one side and sacrificing popularity for the greater good, it is now simply unsustainable.

They would be heroes. Opinion polls and current opinion would suggest that their fortunes would turn in an instant. The lapdog turned crusader. The stooges who said "So much and no more". Their popularity would almost certainly surge.

Even if this were not the case, the public interest would be served and come what may, the Lib Dems would no longer be tied into an agreement formed in haste and based on discredited advice. Anyone who knows anything about the Lib Dems as a party would conclude that they would take that route.

The only way this coalition can fall is if the Lib Dems walk away from the coalition. So why aren't they?

I can only think of 3 possible reasons :

1) They still believe the shadowy men and are terrified that breaking up the coalition will lead to chaos and disaster.

2) Self interest - I've already explained why I do not think this is the sole reason

but there is a third reason :

3) That the Lib Dems hate Labour so much, have become so tied up in partisan point scoring that they believe a Labour government or a Lab - Lib coalition would be even more disastrous than what we have now.

Perhaps they are right, no-one can know, but basing the decision on partisan preference is as reprehensible as basing it on naked self interest. The question of what follows this failed administration is less important than making sure it fails.

Even I, as a lifelong Labour member, am not convinced that Labour are yet ready to govern again. However, I am convinced that this Conservative led government is dangerous and damaging beyond anything we have ever seen from any political party before. They must go and what comes next is up to all of us.

So, Lib Dems, This is Not a Joke. This has gone too far. This is a moment in history that only you can decide, only you can grasp. You must break up this coalition now and you must explain that you are doing it in the public interest. You must reject the shadowy men, so discredited and exposed. You must look to your values and the reasons you went into politics in the first place. It was not to destroy lives, crush futures and destroy the fabric of our society for a generation.

You must take a deep breath and step outside of the here and now. Think of the great men and women who acted when action was so desperately needed. Who put aside their own small ambitions to do what was right.

And you must act. You must act for all of us, because you hold the future of Britain in your hands

In your own mission statement you state that you want to "Create a society in which no one is enslaved by poverty, ignorance, or conformity.”

This coalition is enslaving millions and it is only you who can stop it. Now.

We, the public, can only put as much pressure on the Liberal Democrats as we can to make sure that it does.

Thursday, 26 July 2012

The problem is, you've believed all politicians to be incompetent for so long, you don't realise this is different.

Oh, sure, politicians screwed up all the time. The papers and the news loved nothing more than hanging some hopeless or hapless minister out to dry. It's happened for so long that it's just become white noise. "Fiddling expenses, blah blah blah, cash for questions, cash for honours, blah blah, caught with his pants down on Hampstead Heath........" No-one hears it any more.

But oh how dangerous it turns out to be. When a government take power who are so totally incapable of doing the job, there are no adjectives left. No hyperbole we haven't heard before.

GDP fell by 0.7% last quarter. This is disastrous. It's the third fall in a row. This government staked everything - absolutely everything - on fixing the economy.

They said they would pay off the deficit - They will not do this. In fact, they will pay off less than Labour or the LibDems proposed.

They said they would reduce the welfare bill. - It is rising alarmingly as Osborne and the gang push people like you into unemployment

They said they would control our debt - Debt will be over £150 Billion higher

They said they would protect our NHS - They are selling it to Virgin and Serco before your very eyes.

They said they would protect the vulnerable - They are inflicting the greatest pain on the sick and disabled. They are bearing the brunt of Osborne's failing plan.

They said they would lead on the world stage - Instead, they are a laughing stock, isolated in Europe, rejected by the US.

They said they would root out corruption - But we have seen as never before, they ARE the corruption. Minister after minister disgraced, cheating, incompetent, yet they stay.

They said they would make business work for Britain. But business works for itself, posting record profits while you get poorer. Dazzling bonuses, fraudulent CEOs, criminal bankers.....

This isn't situation normal. This is not OK. We have to act, but we've forgotten that we can. We have to get rid of this government before the whole house of cards collapses. We have to withdraw our mandate. We've got to put down the remote for just a second and stir ourselves. We have to think about politics for a bit.

We are the government. They represent us. We elect them and the power to remove them is ours alone. We can demand an election, we can force change.

But first we have to realise - and realise it quick - this is not just how things are. This government is not just like any other. They are out of control, incompetent, inexperienced, incapable, out-of-touch and driven by belief, not proof.

They have no solutions, no ideas, no answers, no ability, no credibility and nothing at all to offer.

We need an election now and a national government of talents. We need experts running health, experts running education and most of all, we dearly need experts running the economy. Cameron's political experiment has failed, and it's failed spectacularly.

Wednesday, 25 July 2012

Professor Harrington is calling for evidence. He wants to know how your Work Capability Assessments have been.

The wonderful Benefits and Work site have put together a really simple questionnaire. You answer the questions, it only takes a few minutes and then they send you an email collating your answers that you can send in,

PLEASE if you have had a WCA and particularly if you've had more than one, please fill in the questionnaire and send the email. It's vitally important at this point in time that Harrington has all the information he can get from us.

I can't stress this enough. Of all the things I've asked you to do, or drawn your attention to, this might have the most impact, so please do fill in the questionnaire

Please, share this with your networks, send to anyone you feel can take part, tweet, link and generally encourage anyone you think may be able to help to take part. You can click on the twitter and facebook buttons below this post.

Monday, 23 July 2012

As though the universe just cannot bear to stop toying with me just yet, the very day I got a letter to say I'd been awarded higher rates of DLA, after a 19 month appeal, an ESA50 form drops through my door.

I've been claiming Incapacity Benefit, the old, out of work, sickness benefit since 2000. The last assessment I had for IB involved the same scary letters from Atos, the same assessment (yes, SHOCKER : Sickness benefits were always assessed) and the same worry.

The letter back in 2010 was very scary too "If you do not complete this form, you may lose your benefits/If you do not attend your assessment you may lose your benefits.... etc.

The letter said I had to take any medications or aids I use with me. I called the man at Atos :

Me "Really? I have to bring everything? Only there's rather a lot A repeat prescription form won't do?"

Him "Yes, you have to bring everything."

Me "But I have inject strong painkillers and chemo - do I really have to bring needles, syringes and opiates into the heart of Brighton? I'll get mugged!"

Him "Yes, everything."

Me "But sometimes I use a feeding pump and tube, but I don't have one at home, surely I don't have to bring that?"

Him "Yes, bring everything"

The people at Atos helpfully provided directions to the "testing centre". I could take the bus, then walk for 7 minutes or I could take three trains then walk for 19 minutes. With a feeding pump and two carrier bags of medications, it was clear I'd have to rely on the taxi-of-Mum. Yes my friends, somehow, my Mum would have to drop me outside the door on the Red zone of a jammed one way system, with no disabled parking within hundreds of metres. So we did one of those mafia-style body drops where I'm sprawled on the pavement as she screeches away.

I joked at the time that it was like a 16th century witches ducking trial - if you get to the assessment centre at all, you are clearly well enough to work. If you don't, they stop your benefits anyway for not turning up.

So, last time, when I was finally called in from the urine aroma and barred windows of the waiting room, the lady told me to show her my meds. I tipped half a pharmacy onto the table and she told me I'd "passed" there and then. She looked embarrassed. She told me "You're lucky this is still IB, if you were in the room across the corridor, having an ESA assessment, losing an arm isn't enough. You have to lose an eye and a leg too before you might just qualify.

So here, at last is the mythical form. The ESA50 that is striking fear into the hearts of sick and disabled people everywhere.

And it is remarkably odd.

Before it even gets to the "real" questions, it asks if you "misuse Drugs alcohol or other substances"

Why? Is alcoholism or substance abuse no longer an illness? I have a sneaking suspicion answering "yes" to that one won't bode well for the rest of the form.

Next, under moving around it asks "Can you go up or down two steps?"

Erm, yes, I have bowel disease? Or are there jobs requiring two steps to be climbed just the once in a day? If there are, I might be able to consider this work lark after all! What if I can climb up but not get down? The question only asks "either" "or"

No 4 asks if I can pick up a pint of milk. Erm,,,,, yes or I'd never have another cup of tea again. I'd never even be able to lift the kettle and frankly, I'd be dead without tea every hour or so. It's often the only thing that keeps me going - they know we're British right?

No 5 asks if I can turn the pages of a book or pick up a £1 coin. Ace! If there are jobs where you sit and read, and people give you a £1 every time you turn the page, I'm in!!! Sign me up!

Question 11 asks if I can learn to set an alarm clock. Important one that one eh, or all us festering layabouts would never get to work in the first place. Perhaps THIS is what has been holding us back? We never learnt to set an alarm clock!!

I really like this one : "Can you manage to plan, start and finish daily tasks?" Is there a Mum on the planet who could answer yes to that one? I often plan a task, occasionally I even start them, but I rarely finish them. Somehow I get the feeling they're not talking about my household management though.

No 17 asks how often I behave in a way which upsets other people - does the DWP count? Only I imagine I upset them most days.

Anyway, the point of all this is to show how utterly bizarre the criteria for ESA are and most importantly how, if you have no advocate, know nothing about the changes and think you can just fill in the form with what comes to mind, things probably won't turn out awfully well. It is a veritable minefield of traps and tricks.

So, if like me, you just got yours, call your GP and find a welfare advocate who can help you TODAY. Don't wait, they only give you four weeks to fill in the form and get all your evidence together.

Now I just have to hope the universe wouldn't be cruel enough to take away with one hand (IB) what it just gave with the other (DLA)

Friday, 20 July 2012

So today, the Telegraph (of all papers) carries an article on IMF warnings to relax our austerity programme. They point out that

"The IMF said that the British economy may not be able to cope with the scale of austerity planned for 2013-14.

"The IMF suggested there was little evidence to indicate fiscal easing would provoke a strong adverse reaction from markets"

They then went on to slash growth forecasts for the UK by a bigger margin than any other developed nation, to just 0.2% having predicted 0.8% just three months ago. They have cut growth forecasts for next year from 2% to 1.4%

Now, if you've glazed over and all you can read is "Blah blah-blah blah-blah...." here are the important bits.

Firstly, the economy is in a much worse mess than we feared. Everyone expected growth to be returning by now, instead, we are mired in recession and that recession is much deeper and lasting longer than anyone thought even a few months ago. It is almost certainly at least partially, a direct result of austerity policies

Secondly, the Labour and Lib Dem plans for the economy pre-election were right and the Tories have got this spectacularly wrong. Most voters did not vote for an austerity manifesto and I don't think it is any longer unreasonable to call a vote of no confidence in this government if they fail to relax their plans for the economy immediately. They have no mandate, no ideas and no ability. This is getting serious now. We risk losing a generation of young people to unemployment, a flatlining economy for a decade or more and grinding poverty for those casually crushed by the austerity steam roller.

Finally, the lack of global imagination to solve these credit problems decimating our futures is breathtaking. What do the IMF suggest?

Tax cuts. Yep, give carefully selected groups of society a bit more money back to spend in the economy. Also, maybe build some stuff.

It seems to have escaped every lofty economic genius that taking with one hand (austerity) yet giving back with the other (tax-cuts) can only ever be a zero sum game. In primary school terms, 2-2 = 0 Add 2 back again and you still end up with 2

"Building some stuff" is much more promising. But we're talking post war scales of stimulus to have a hope of recovery.

So George, I propose (as do many others) that you announce a National Restoration project. You will borrow lots of cash at historically low interest rates to build houses and bridges and restore national treasures.

You will introduce the biggest apprenticeship scheme in living memory and offer real paid work to those who are unemployed. They will build their own homes, learn a trade or skills along the way, then they can live in the home they worked on themselves at a favourable rent. This way, we can train an army of engineers, builders, electricians, plumbers and architects and give them a secure future. If Government cannot build and then rent affordable housing at a profit, they really might as well give up.

We must build and invent and innovate our way out of this mess with a sense of national spirit and solidarity. We can build opera houses or park pavillions; we can create treasures for the future or rescue those we already have. It doesn't matter too much what we build, but it matters very much that we start to build something. And soon. The scheme can rehabilitate offenders, train those without skills, or simply give young people a job and some hope. What's more, we'd be building more than just bricks and mortar. We'd be re-building communities.

A few houses won't help, one or two high gloss national announcements won't do the trick, things have gone too far. We need a vast national scheme backed with real commitment and passion.

The IMF warnings are stark and leave little room for doubt.

Now is a time for great women and men. For courage, inspiration and leadership. It is a time for pulling together, not falling apart, we must reach for the stars, not race to the bottom.

I'm not sure that there is anyone left here, or abroad, who believes George Osborne is that man of courage or that this Government can provide the inspiration we need.

Wednesday, 18 July 2012

We think we achieve nothing, but never see the effects of even the smallest things we do. A kind word in the street to a stranger that saves a life, changing a few minds about something important. Who go and change a few more.

When you are at your darkest point, when you can go no lower, when darkness surrounds you entirely, there are just tiny acts, tiny fleeting moments of pure joy. A drip of water onto parched lips, so sweet, it tastes like honey. A cool hand on your skin, a warm, summer, breeze through the window. That is all there is. The only signs amongst the horror and the hopelessness and the bleeps that life is there, waiting.

The smallest act never seems wasted again.

I have often read that great women and men, on their deathbeds regret that they didn't change the world. They died, poor and cold and obscure. Often ridiculed or imprisoned or killed.

But what kind of world would we live in today if they hadn't bothered to try? If only they could look back and see what their little acts did.

It's the ones who never give up that change the world. But one tiny act can be enough. Just changing a few minds about something important. Who go and change a few more.

Tuesday, 17 July 2012

"EDMs are used for reasons such as publicising the views of individual MPs, drawing attention to specific events or campaigns, and demonstrating the extent of parliamentary support for a particular cause or point of view. Although there is very little prospect of EDMs being debated, many attract a great deal of public interest and frequently receive media coverage."

John McDonnell, backbencher Labour MP has been the most loyal supporter of the sick and disabled in our campaign to scrap the DWPs Work Capability Assessments (WCAs) that are used to determine "fitness for work." He has tabled this EDM to raise awareness of the problems, consulting widely with disability groups, disabled people and charities. (full text at the end of the post)

Currently, the EDM has received 78 signatures, making it the 9th most signed EDM!! This is completely fantastic and thank you SO much to those MPs who've already signed. It's wonderful to see so many new names strengthening the voices of sick and disabled people and realising that far from being unreasonable, we are urgently concerned that the WCAs are failing so many people with serious illnesses and disabilities.

But I have even better news! Jamie Cartright, disability campaigner and writer (@Epipsychidion86 on twitter) has put together a brilliant, simple website to help people ask more MPs to sign. He had the idea a few days ago and must have spent every hour finding all the information and putting this together.

This link http://edm295.blogspot.co.uk/ will take you to the site and you can see who's signed, who can't sign, who can and use an easy tool to approach any you feel might like to know more about Atos, ESA and WCAs.

Although EDMs are largely symbolic, the more MPs that sign, the more we know support their constituents suffering through wrong decisions, lengthy, stressful appeals and increased poverty.

"[T]his House deplores that thousands of sick and disabled constituents are experiencing immense hardship after being deprived of benefits following a work capability assessment carried out by Atos Healthcare under a 100 million a year contract; notes that 40 per cent of appeals are successful but people wait up to six months for them to be heard; deplores that last year 1,100 claimants died while under compulsory work-related activity for benefit and that a number of those found fit for work and left without income have committed or attempted suicide; condemns the International Paralympic Committee's promotion of Atos as its top sponsor and the sponsorship of the Olympics by Dow Chemical and other corporations responsible for causing death and disability; welcomes the actions taken by disabled people, carers, bereaved relatives and organisations to end this brutality and uphold entitlement to benefits; and applauds the British Medical Association call for the work capability assessment to end immediately and to be replaced with a system that does not cause harm to some of the most vulnerable people in society."

Monday, 16 July 2012

There are probably now more things I can't write about on my blog than things I can at the moment.

But yesterday, one of the Things I Cannot Share went official, and it's GOOD NEWS!!

Out of the blue, after 19 MONTHS of trying to claim disability living allowance (DLA), a nice lady suddenly phoned up. Out of the blue. I knew something was afoot because she was a nice lady. From the DWP.

I was not planning on picking up the phone at all. I was so low and depressed, I could barely make myself have a bath or brush my teeth. It had been a Bad Week. When I say a "bad week" that's a bit like saying Hitler was "a bit mean" or the Titanic "hit a bit of a hiccup"

But most of the badnesses were Things I Cannot Share and there are only so many times you can tweet "I'm so depreeeesssssed" so I just sort of mooched around feeling dreadful.

Yet suddenly, there I was, my answer machine chirping away with the nice lady from the DWP and I hovered by the handset, suspicious and to be honest scared to even talk to another human - especially one from the DWP.

"I'm phoning from the DLA department. I have some good news for Susan Marsh.....

I shook my head in bewilderment...

"We've come to a positive decision on Susan's DLA appeal.....

I snatched up the phone and tried to sound like I speak to real humans

After a few security questions, the nice lady told me that following a letter I'd written two weeks ago, refuting a piece of evidence they had added to my file, that they had reviewed my case with a Proper Doctor. A doctor who knew about bowel disease.

Goodness only knows what this doctor had said, but the nice lady then apologised!!!!

Yes, she apologised for disregarding the evidence on my form. She said they understood that crohn's can be very Fatiguing and Painful, but most cases were remitting - the patient went through periods where they were often well. She said they now realised my crohn's wasn't that type at all and she was sorry. (Again.)

She said they had awarded me a "lifetime award" of DLA at "very favourable rates" so that I "wouldn't have to go through this again" (I let it go that "lifetime" awards haven't existed for some time and that the introduction of PIP next year would negate all unlimited awards and stayed schtum.)

I asked her if she could tell me what the award was, but she just repeated "No, but it's very favourable." She would phone the tribunal that day and let them know and I could expect to get DLA and full back pay very soon.

I wibbled a bit incoherently and all I wanted to do was get off the phone. In the middle of a Bad Week involving quite a lot of medication, it was entirely possible I was hallucinating.

So we were cautiously, bemusedly, optimistic, Dave and I.

But we waited for the letter. Not the brown envelope of Doom this time, but the brown envelope of Hope. (Remember those? I do.)

Considering I've barely left the house since January, unable to get the kids to school or do the most basic of chores, this is probably reasonable. But in DLA terms it is.... well, the difference it will make to my life and my family is unimaginable.

We will go from no help to all-the-help.

It's such a turnaround, I am faaaar from accepting it.

Now the cynic might say that the DWP seem to be rejecting most claims in this way now, forcing the claimant to go through a lengthy and incredibly stressful appeals process. Then, two weeks before their tribunal date, they review the case and anyone still standing at the end gets a read through of the file with a doctor. This is certainly the experience of Citizen's Advice, and anecdotally, it is what we hear as campaigners

I went bankrupt in the time they refused my claim.

But you all know how bad I am at cynicism. The letter I'd written was very strong, a last ditch appeal to their better natures and their sanity. I like to think it actually worked - that there were better natures and sanity. That somewhere, within this tortuous, infuriating process of course there have to be good people too.

I like to think there's cause for hope, even when we think all hope is gone - well clearly I do, I fought the welfare bill. But last week, in lots of ways, I thought life was hopeless.

But today, I woke up remembering my family don't have to be poor any more. For a while at least. And that is a good enough thought for me, for now.

Saturday, 14 July 2012

A new Report, "Past Caring" by the team at We Are Spartacus looks at plans by Worcester County Council to cap care funding for sick and disabled people.

The report concludes that this move will see sick and disabled people forced into institutions, a move away from Independent Living which is both unwelcome and almost certainly illegal.

I've attached the press release below, and you can see the report by clicking on the link above (highlighted text) but do read down to the end if you would like to see the very moment that irony died. An image tweeted earlier in the month by the very same council.....

PRESS RELEASE

New council policy condemned as ‘flawed and wrong’ as national campaign group publishes report on Worcestershire care changes

In the wake of the white paper on social care and in light of recent uncovered abuses such as Winterbourne, Worcestershire County Council’s proposed changes to care for disabled people in the county have been condemned as ‘flawed and wrong’ by a national campaign group which has published a new report on the proposals.

‘Past Caring’, which has been published by the research team at the WeareSpartacus campaign group, analyses the county council’s proposals for a ‘maximum expenditure policy’, which would impose a cap, meaning that anyone needing significant amounts of support may have to go in to residential care. As well as criticising the council’s current consultation exercise, the report shows the new policy:

·Will mean disabled people get less support

·Will mean a deterioration in care standards and quality of life

·Could lead to disabled people forced into residential care, even if they don’t want to

·Could force disabled people to rely on charity for the help and support they need

·Goes against the recommendations of the Government’s flagship white paper on social care reform

·Could be open to a legal challenge

Dr Sarah Campbell, one of the report’s authors, said:

“We know that times are hard; disabled people in Worcestershire and across the country are being hit by cuts to benefits and social care services. But the county council’s approach is flawed and wrong. Flawed, because any ‘maximum expenditure policy’ will have a series of knock on effects for health and social care providers which may end up costing even more; and wrong, because disabled people should be encouraged and supported to live safely independently.

“Institutionalising disabled people is not the answer to the social care crisis, in Worcestershire or anywhere else.”

The report acknowledges the challenges facing local authorities across the country, but also highlights the principles of independence for disabled people, including a right to choose where and how they live, be part of their communities and have control over their day to day lives.

"In a week when the Queen visits the County to open a new £60 million library it’s sad to reflect that the lives of some individuals in the County are threatened by such negative proposals. These proposals, if implemented, will undermine a generation of progress towards independent living and cause real mental anguish for individuals and families.”

Local resident Steve Sumpter adds:

“The council needs to be more active with its consultation, and respond to the searching questions it’s refusing to answer. But disabled people, their friends and families also need to speak up. The consultation finishes this month (July), and it’s crucial their voices are heard. It’s also vital they contact their local councillors and MPs to express their views before the final decision is made at the end of September.”

Monday, 9 July 2012

If you have a rare and complicated condition that requires lots of surgical intervention and drugs so hardcore they come with a health warning, you will have faced some pretty momentus battles.

Battles for the right treatment or timely treatment or a new referral or a not-yet-quite-licensed-for-your-condition medication.

The bit most people won't know is that not only are the battles often life or death (and I use not a jot of hyperbole here) but that you face a surreal system that seems designed by a malicious sprite in partnership with Freud and Castro.

You can just hit an NHS brick wall where you know you need a certain thing to happen, but you just can't achieve it. You can pull strings, you can beg, you can provide evidence. Nothing. If you hit The Wall there is no way under through or around it.

You might think I mean for a new hip or a quick nip and tuck, but no, I actually do mean when you're critically ill.

You say something hurts, they reply "that's not possible"
You say you need help soon, they reply "We've got nothing til September"
You explain all the reason's they should, but "computer says no"
You try to get letters or referrals but they make no difference.

Oh boy, have I been there. More times than I can remember.

Now, however, suddenly it would seem that I have a "Good GP".

Blinking into the light, I am starting to see what a vaaaaast difference it can make. She writes stuff for me and listens and "get's it" and she's in my corner, and she even makes jokes and.......

I can hardly bring myself to write any more. I've had so many bad experiences, I can hardly begin to believe I might have found a good one.

But certainly, for the moment, she kicks-ass like a ninja and it's come at a time where a ninja GP is very, very, helpful.

Saturday, 7 July 2012

There can be little more frustrating than being cornered with no escape from a reformed smoker. They are more zealous, more smug and more judgemental.

Well, imagine having a condition for 29 years, trying everything from emu oil through homeopathy, flower remedies, yoga, meditation, diet, drugs, surgery, acupuncture, supplements, kombucha, and every well meant nonsense in between, just to stay as ill as the day you started.

It's a very, very, very long journey.

At some point you learn acceptance. You learn that this is your life for better or for worse, for richer or for poorer, in sickness and in health. You learn that, in fact it might be til death you do part.

Does this mean that you give up? Far from it. The hope that somehow, some day you will find that golden key, that elusive part of the jigsaw that will finally unlock the doors of your own personal prison burns bright, just as it always did.

It is the day you stop asking "Why me?" and simply answer that internal plea with "Why not?"

Does it mean that you became cynical and closed your mind off to new innovations? On the contrary, I believe in fact, that it is the day you found acceptance. The day you decided that you would live your life as it is, not as it ought to be. The day you stopped being angry.

You learn to take one day at a time and live each day in the moment. You learn to submit to what will be, always hoping, as anyone does, that tomorrow will hold miracles.

Well, if you do smoke and you've ever been cornered by that born-again-smoker, just imagine what it's like to be sick and find yourself cornered by a born-again-sickie.

This person will have the same condition as you. They will have had a fairly mild case of it. After one hiccup, immediate treatment and a full recovery, they will have gone into remission, their lives will have been transformed by this episode as most lives are. The difference is they will believe that they found the golden key.

They almost certainly didn't. They odds overwhelmingly suggest that they went into a spontaneous remission. Nonetheless, they will have shunned all conventional, modern day miracles, forgetting the surgery that almost certainly save them. They will believe that All Medicines Are Bad. They will almost certainly say the words "proven cure for cancer" at some point.

Some are pseudo-scientific. They sit there, explaining how the the synapses or glands or cells can be stimulated into repairing themselves or reconnecting with themselves or generally behaving when soothed with some Amazonian tree-frog vomit combined with simple vinegar/honey/vitamins. The very little you do know about science makes you want to laugh out loud, but you sit and smile attempting an earnest, interested face.

If you are truly to go through the full zealout experience, they will tell you that you just did it wrong. They are certain you didn't try hard enough or stick to it faithfully or believe enough. You can't be meditating right if it didn't work. Somehow (they never say how) you are "blocking your own recovery." They unfailingly conclude immediately and certainly that "something is still troubling you" The fault is entirely yours. You are not as enlightened as them, not strong enough to do what they did.

Though the rictus smile stays painted on your face, you fantasise about shoving their born-again faces into the birthday trifle or wedding cake.

But at some point on this never-ending journey, you stop being angry. You realise that every last scrap of advice comes from a place of love. No-one bothers to waste their time on something they don't believe in. They have found their golden key and because they are good people, they want to pass it on. They want you to be well, they want you to feel the incredible new freedom they feel.

Sometimes it will be an acquaintance you met only once or twice, but they felt sad when they learnt how ill you were and read an article on your condition years later and sent it on to you. You've read it a hundred times before, but they don't know that.

Some will insist that you stop smoking/eating gluten/breathing/consuming dairy products/drinking. But they truly believe it will be healthy for you.

These friends and family, lovers and strangers have found their key. They just don't realise that no key opens every door. Golden or not.

Friday, 6 July 2012

I've watched a lot of "debates". Watched literally hundreds of parliamentarians stand at the despatch box by now.

I have never seen a better performance than Ed Balls gave yesterday. As Louis Walsh might say, "He owned the stage"

We can descend into a bit of partisan point scoring, but there's just no denying he was masterful. He controlled the House like a conductor, riding the cat calls and jeers with humour and confidence, his oration soaring and swooping from loud and commanding to quiet and dripping with authority.

Most interestingly, when they jokes and jibes settled down and he spoke seriously, the entire House fell silent in a way I've rarely seen before.

As he leant on his arm, his hair swept across, he actually reminded me of that other great orator who held the House in the palm of his hand. Both he and Nye Bevan overcame stutters to create such magic in parliament.

When he warned that the Government were making a grave mistake, he held Osborne's eye, spoke quietly and again the House fell silent.

By the time Osborne stood up, he must have felt bruised. His pip-squeaky voice and unruly quiff gave the air of Little Lord Fauntleroy, a 6th form debater so out of his depth, it may have been better for all if he'd just wandered off and found William Hague.

He had only one thing to say ; "They started it Miss!" - over and over in a playground loop, nothing to say, nothing to add, no way forward, no panache, no charm, no charisma, no confidence. Just a little-boy-lost on the world's stage.

I've seen right wing commentators write articles on how partisan and lowly the debate was. Well no, your man was just an embarrassment. This boy-child is our Chancellor! He is the man tasked with getting us out of the worst financial crisis in living memory. HE is the one who needs to persuade, to charm, to cajole and to inspire.

On yesterday's evidence he simply is not up to the job. Not in any way at all.

But this interested me : When they all trooped back after the vote, Osborne was a changed man. He seemed weak with relief, quieter, conciliatory. Even smaller and more insignificant - if that were even possible. Immediately, his aides started to brief the BBC's Nick Robinson that, no, in fact, he withdraw accusations that Balls had been involved in the Libor fixing scandal.

It was clear that this vote had been much, much, more important to him than us mere mortals could know. I wonder who had made George so determined to avoid a judge led enquiry that he would mislead the House repeatedly to discredit his opposite number, only to withdraw the accusations as soon as the vote had passed?

How desperate must he have been to flirt with a libel case to make his oh-so-shabby and pointless case?

This man is our Chancellor - one of the most powerful men in the world. The Conservative Party should be deeply ashamed by both his performance and his character after yesterday's debate. For all our sakes, they should find a politician who could actually manage the job. And they should do it fast. He holds all of our futures in his slippery hands.

Wednesday, 4 July 2012

If you have a severe, long term illness, you've almost certainly learnt a skill I learnt. Maybe you have other reasons for learning it.

As the long, long needle is thrust deep, deep into your spine or head or chest, you go to that other place. As your heart fails and you drift away, you mutter a few words to your soul. "I will be or I will not."

As the anaesthetic seeps into your blood and you wonder "Will I wake up?" you remind yourself from somewhere else that sleep is sleep. Either way, you won't care.

As the tube goes deeper into bowel or nose or vein, you step out of yourself and look on impartially. The other you starts a chat or shows you images so beautiful you forget. She is tough and true. When you tell her you might die, she nods and agrees. "We all die." she reminds you.

When you think you can't bear any more, she reminds you that you have to.

When you scream "I can't" she replies "you will"

You drift above yourself and learn to not be there.

In time, you can do it at will. Every new ordeal, every new unbearable is just another moment. The other you appraises the situation coolly, detached from the here and now. "You are small, a little life. This is just a blink of time in a life amongst billions of lives."

And you go to that other place and you wait.

Mostly you have learnt to wait in peace, because peace gives you the best chance of survival of all.

********

I often think of the skills chronically ill or disabled people can bring to the world.

We learn to survive. We learn to do it in a world often ill equipped to deal with us and unwilling to empathise with us. We learn to be reasonable when all we want to do is scream. We learn to endure when most would believe endurance impossible. We learn to believe in ourselves when no-one else will.

But this gift of detachment, this ability to stand aside and judge ourselves with cool appraisal has been troubling me lately.

Sick and disabled people often live as "the other" they are used to looking at the rest of society and stripping away the "can't" and the "won't" and the "too scared" and the "too selfish"

Surely, it can't only be me that lately finds herself more and more detached, watching the last gasps of a crumbling corrupt order? That sees debauched Roman emperors or megalomaniac monarchs or precarious empires?

Daily, like a parade from history they line up - disgraced politicians, power-crazed media moguls, criminal financiers, greedy businessmen, corrupt police chiefs, despotic dictators, the head of this and the CEO of that on rape or corruption charges. Expenses cheats and tax evaders and Ponzi scheme charmers.

Their day has come and gone and they can't see it. Their own greed and selfishness and stupidity has gobbled them up. They had it all, there, in the palms of their hands and like every time before, they gambled it all away.

Got just a little too lazy, just a little too weak. A little too bloated and comfortable. Forgot they were privileged and started to believe that they were special. Forgot that they were lucky and started to believe that they were entitled.

The daily me fights them and tries to expose them, but more and more, the other me watches them from a distance and sees them for what they are. More and more I wonder if we really need to do anything at all but watch them crumble.

Tuesday, 3 July 2012

May I present Thierry Breton, Head of Atos, the firm charged with "assessing" whether or not sick and disabled people can work.

With his £830,000 salary and recent £1 million bonus, he is now officially "worth" 331 of the people his company are charged to assess. 331 lots of annual ESA stripped away from people with nothing else to rely on.

With 38% of decisions going to appeal and nearly 40% of those decisions found to be wrong, thousands of people are added to the list of suffering every month - 3,100 cases in May alone. Some may question why he got a bonus at all.

Well, clearly it's because he's worth it. His going rate is the livelihoods of 331 sick or disabled people. That's how important he is. 331 times more important than people like me.

I am in a fix. I am in a fix so fixy it has been stuck with superglue and nailed for good measure.

It is a fix with no immediate unfix. Basically I'm screwed (fixy pun intended.)

I am sitting with a cup of tea, deflated with the fixiness. I am - as most sick and disabled people have to learn to be - an Empress of fix-solving. I have fixed fixes that seemed unfixable. I have urged, begged, manoeuvred, cajoled and outwitted my way through many a fix. I have a PHD in fixes. But this fix was designed by Mr Rubix himself.

A world economy sucking hope and dreams down the plughole for the want of a bit of imagination and a lot of work.

It is the last days of Rome, literally, fiddling while claimants burn.

I have no idea what's going on with my country any more. If we cut out the corruption would there actually be anything left? It seems we must totally rebuild our economy, our banking system, our media, our democracy, our society and our communities.

Daunting really.

Yet we are offered public enquiries that will conclude nothing, legal cases where no-one will be found guilty, Lords reform that almost certainly won't happen, expenses investigations that let the culprits keep the money they stole and cheating ministers allowed to keep their jobs.

Monday, 2 July 2012

If you're slightly geeky, like me, then the best time to follow me on twitter is from about 7pm when the kids go off to bed.

All day, people send me links, or I see links on my timeline, and I open them to read later. In the evening, I read them all and comment. Then I have a glass of wine or two and become expansive. I splurge my opinions about the place a bit, there is usually some mocking of government ministers or random debate about banks or supermarkets or workfare or business, depending on the links I've read.

For some time I've watched the news and seen scenes of abject horror in Greece, that nice haven of ouzo and sunburn so beloved of Brits abroad.

Just in case you somehow missed it I want to interject here and point out that the Greeks are starving. In case you missed it. In case you thought the riots were a bit of discontent from radical troublemakers. In case it hasn't really sunk in. They're starving, they're queueing for soup kitchens and scrabbling in bins for food. They are proud people who work hard, not the profligate siesta hounds, powerful men would have us believe. They are our neighbours, our brothers and sisters.

I wondered why Osborne and Cameron couldn't encourage us all to holiday in Greece. I mean, it would be something wouldn't it? If we all showed a little solidarity and booked our holidays in the fishing villages and tourist hot-spots of Mykonos and Athens? If we helped those proud small businesses to sell a little more olive oil or fresh seafood or ice cream?

After a while, I had a thought. All of the countries in trouble were holiday destinations - Greece, Spain, Italy, Portugal even Ireland. The one's weathering the storm were the colder, northern countries. Would it not make sense to encourage and incentivise holidays?

There was another pressing urgency to my question - was it not better to find a joyous, uplifting way to beat this depression - would it not pay dividends in itself, easing some of the discontent between the Eurozone countries and giving people hope that there were better ways than austerity to sort this mess out? Hell, was fun automatically not an option just because it was fun?

A few weeks ago, there were rumours of another 700 billion bailout for Eurozone banks. I had just watched Spanish banks get a bailout of more billions and the markets ate the extra money mercilessly in about 48 hours. With the press of a few buttons, the banks or markets appeared to have eaten the very money they had just created!! Nice work if you can get it eh?

I thought it must be better to give actual human people the money to spend and have a nice time if you're just going to flush it all away anyway?

I asked more seriously on twitter if any economists could explain to me why my holiday idea wouldn't be a better stimulus to the Eurozone than another bank bailout.

Warning : Be careful of tipsy tweeting on twitter. Especially if you in any way suggest you might have solutions to something quite big.

I found myself in a conversation on twitter, with the curiously well connected Declan Gaffney and some other tweeps - as you do and put my idea - couldn't we somehow incentivise countries like Germany to go on holiday to places like Greece by directing any Eurozone bailout money instead, into a scheme where it was used as spending money for tourism going directly to the local economies - the fishermen and bakers and restaurateurs so desperate for business.

Astonishingly - and rather scarily, none of them thought it was a bad idea. At the very least they agreed it was a rather better idea than only bailing out the banks again and could be done in combination with another bailout.

After one nice tweet from Jonathan Portes I tweeted, "See Declan my idea haz *economic credibility* #proud face" which shows you the level of a) my tipsiness and b) my lack of grown-up-ness throughout the whole chat.

After about an hour, I checked the profiles of the clever tweeps giving me advice and found that they were Jonathan Portes director of the National Institute of Economic and Social Research (NIESR), Duncan Weldon, Economist and TUC Senior Policy Officer and Ian Mulhheirn, Director of the Social Market Foundation.

Gulp.

I tweeted "Whoops, just checked all of your profiles *rabbit in headlight face*

Which no doubt added even more to my economic credibility.

I went to bed, embarrassed at the fact I appeared to have just tried to present an economic idea to some people who actually knew stuff about economics. Quite a lot actually. Unlike me.

The next morning, Declan tweeted that I ought to "check my emails. Sitting down."

Jonathan Portes and Declan thought it was actually quite a good idea. One that might in fact solve quite a few problems causing the current stalemate in Eurozone economics. They wanted to pitch it to the FT!!! Who accepted it!!!!

Gulp.

They've written about it here as you can see so a huge thanks to Declan and especially to Jonathan for translating my tipsy tweeting into econospeak.

Quite incredibly, as is my luck, it turned out someone had had a spookily similar idea some time before!! The FT couldn't publish our article as they'd already published his! nonetheless, Jonathan wanted to post the article on his superb blog. But I nearly got an idea in the FT, which was awfully exciting.

But here's a thought. I do like economics, I hate too much self effacing and dumbing down, especially from women, so I won't pretend I didn't know some very basic reasons why this could be an alternative.

What's more, I do passionately believe that we can solve many of our current problems by swapping pain for innovation, by inspiring people rather than crushing them. and by fostering a sense of the achievable, not by state-sponsoring misery.

Generally, new ideas can't be heard. But often, they come from nothing at all. If we just listen.

If we listen to the patient saying how their care could be more effective and efficient, if we listen to the worker who sees the waste every day. The poor could tell us what keeps them poor and the sick and disabled could tell us how our care and support could be administered in a way that was better for us and almost certainly more cost effective. If we just listened.

If we listened, our children could tell us what they need in school and we could act. If we listened, our staff could tell us where our businesses succeed and fail.

And if we listened, the Greeks would tell us they want work again. They want trade and pride, and some hope. They want to feed their families.

Sunday, 1 July 2012

I had forgotten to think about the logistics of getting there, which is just the sort of thing I do. On Thursday therefore, when it came to booking train tickets, I realised it would mean getting up at 5am to get to that big London and speak for 9.30. Clearly that wasn't going to happen. If it did, I would be an incomprehensible blob of stuttering exhaustion by the time I tried to open my mouth on stage.

But fear not, the chivalric order of the TUC swept in and booked me a nice hotel for the night before and took me for Chinese-food in Chinatown when I got there. There may even have been glasses of wine, but I couldn't possibly say. So many thanks to John Wood and Alen who were models of organisational skill and so attentive I felt spoilt.

The squidgable, adorable Mark Ferguson was there. He went a bit sad when he told me how he'd phoned Kaliya the day I had my op and was begging for help from recovery, how a friend had walked in and asked "What on earth's wrong with you" he looked so pale. He'd replied "I'm trying to save my friend's life. It's sobering to realise that if you blog, if you pledge to make corruption and incompetence public, others feel your pain and hurt when you hurt.

It's sooooo odd to finally meet people you feel you "know" so well online but have never met in the flesh. Odd-diddly-odd-odd it is. Nice though - you get over the shock of faces that aren't quite the ones in your head quite soon.

Then it was time for my speech. I hadn't really prepared one - I never usually do. I just sort of stood up and told the Spartacus story - you know, the mess we were in for so long, how we decided to fight back, how we made Lord Fraud pooh his little pants - all of that stuff. I got a lovely long round of applause after, that made me blush and wave my hand in a stoppy-kind-of-awwwww-shucks way, but that just turned it into a slow hand clap of appreciation that made me sink into me chair and blush more. (Incidentally, Netroots, massive chair fail - they were sort of slanty downy and slippery, so my trousers-of-unknown-man-made-fibre kept making me slide off. Not very dignified.)

After my speech, I persuaded the disabled posse listed above to "bunk off" and get tea in the lobby to catch up. Matthew nobly took on the job of chief munchie gatherer and got us all delicious little jammy shortbreads from the Sainsbury's just down the road. It felt very nice for the guys in the wheelchairs and us others of indistinguishable disabilities to be the naughty kids. Somehow appropriate.

Then, I bunked off from bunking off and went for lunch with the incomparable Declan Gaffney (@djmgaffneyw4) author of the government busting statistical stuff from Spartacus Report. There may even have been glasses of wine, but I couldn't possibly say. Declan has taken it upon himself to provide unofficial PA support to Kaliya and I whenever we are in London and carried my bags, pushed me in a chair when it all got too much, escorted me all the way back to Victoria when the time came to go home and saw me safely on to the train. What a thing eh?

Anyway, we went back to the conference in time for the final session - lots of 5 minute segments on different ways to campaign effectively online, all rounded off with a barnstorming speech from Owen Jones. There was a race to the free bar after and much schmoozing - the bit everyone really goes to these things for. There may have been glasses of wine, but I couldn't possibly say.

I had an odd day. It's strange to walk into a very crowded room of people who all know who you are. It's slightly discombobulating to be "someone" when, clearly, in real life I am no-one at all, just me. It's peculiar to be a bit famous in my own lunch break.

Blogging gives you anonymity on the whole. None of the people I know in "real life" think of me as famous. But in the rarified atmosphere of a political conference, I'm constantly surprised by how many people know what we did, by the awe they treat "the disabled" with now. We are a force to be reckoned with my friends! We are seen as the indomitable; no longer the downtrodden. We are feted as the very model of kick-ass campaigners. People read our report and look at the amendments we won in the Lords and shake their heads in admiration. It's all very Alice in Wonderland. They listen to how we harnessed the might of the internet and they take notes!!!

Wriggling with discomfort, I deflected compliments with very poor grace.

My life has changed, I'm finding it awfully hard to comprehend. Spending, as I do, so much time tucked up in my pjs, blogging from bed, I'm not exactly sure who this other me is - she probably doesn't exist, but in the eyes of very many people she does - we do - and it takes some getting used to.

About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.